Hi all ,
Last year my husband unexpectly lost the sight in one of his eyes after having various tests he was diagnosed with optical neuritis. The consultant reassured us it would be very rare for him to lose the sight in his other eye but unfortunately whilst on holiday in August he lost the sight in his other eye and Is now registered as beening severely partially sighted and is beening tested for a rare form of lebers disease ! This has completely turned our world upside down we are both in our 40s with 2 young children ! I am trying to support him the best I can he is truly amazing the way he is coping but it’s so hard to watch him struggle he has good days and bad sometimes becoming understandably depressed . He is now unable to drive but with the amazing support of access to work can continue to do his job with help from a support worker . I am trying to remain positive for the whole family but quietly find myself becoming upset and not coping . It all seems a bit sureal really ! Any positive vibes from you amazing people would be greatfully received xx
Dear Katie, welcome to the forum. I am so very sorry to hear about your husband’s eyesight problems. I know quite a bit about eyesight problems because I have had eyesight problems since my 20’s and I know what it’s like. I’ve been a patient at Moorfields eye hospital for nearly 30 years now. Thanks to Moorfields I’ve led a fairly normal life. After having several eye operations in my 20’s and 30’s I now have advanced glaucoma. I too had to stop driving in October of this year.
It sounds like it is still early days since your husband had his latest setback. Something as life changing as this will take awhile for both you and your husband to adjust to.
I know how difficult things are but try to remain positive if you can. Is his condition stable now? I really do hope so.
There are lots of things that will help him to cope ( as I’m sure you know). Make sure you have very good lighting indoors and don’t leave objects like shoes lying around.
Please keep in touch.
Hi Katie
It’s often once initial shock wears off, and caree starts getting help, that carer suddenly realises " and what about me?" and finds that no one cares for the carers.
So we have to do it for ourselves. Hubby will continue to adapt and has to learn to cope with his emotions about it all, he is still an adult albeit one with a physical condition. You will, of course, support him but you don’t have to live his life for him or take on all his burdens. If you do you will collapse, emotionally as well as physically.
So look after yourself and put your well being first. Exercise regularly, get daily fresh air, eat healthily, play with and support your children, have a social life away from hubby and family where you can leave your concerns behind. Have the odd few days away every so often. Get support, from family, friends and professionals, consider counselling and mindfulness.
This isn’t selfish, it’s modelling good healthy behaviours. Hubby can do most of this for himself as well. Your role is not to do everything but to help him become as independent as he was before, and for you both to share the load.
It’s all about getting life back in balance.
May sound a tall order but you can combine, for example I go to dance class 2/3 times a week which covers exercise, friends, stress release and respite all in one!
Have you also checked out any critical illness cover he may have? It’s often part of mortgage or job benefit and can pay out which can help. It often gets forgotten when something actually happens
Kr
MrsA
Your husband would be eligible to join the ‘Dial a ride’ scheme. You can apply for this online or by post and does not take too long. Dial a Ride is free and your husband would be allowed to use this service twice per week. He would be allowed to take you (his carer) with him or another adult.I use Dial a Ride with my elderly mum mostly for shopping xx